Most of you probably know at least part of my story, but for those who don't, here's the gist...
I'm a single mom of an adorable little boy named Will who was diagnosed with Acute Lymphoblastic Leukemia (ALL) about a month after his 2nd birthday.
His father has no involvement in our lives, aside from court-ordered child support.
Due to a combination of a poor economy, a poorly - run business, and because I had to leave work early so much (for a period of about 2 months) because Will kept getting fevers, I got laid off from my job in February of 2013.
I had picked up a few hours temping, but 3 weeks later, Will was diagnosed with cancer. We spent the next month living in the hospital.
His body responded well to the medicines, and his doctors told me the rest of the treatment plan was 2 YEARS.
I had a little money set aside, but I was already stressing about the future. I asked one of the doctors how soon things might return to "normal" - at least normal enough for Will to go back to daycare and me to return to work.
She hesitated a moment and finally told me the most grueling and time-consuming part of the treatment would be over in about 4-6 weeks.
22 months later, and we're just now getting back to "normal".
The first 6 months home were complete hell for both of us. Will would spend day and night demanding huge quantities of food (because of the steroids he was taking), and then not eating 90% of it (because the chemo made things smell and taste funny, as well as caused nausea). He alternated between screaming (out of frustration and confusion) and crying (because he was in so much pain and we hadn't found the proper dosage and combination of painkillers yet). All the drugs and pain also made him very tired. He didn't feel good, and wanted to be held most of the time. I don't think he left the couch once during those first 6 months, except briefly at night when he'd sleep in his crib for an hour or two before waking up and screaming for more crackers or mac n cheese.
I thought to myself: how could I possibly send him to daycare when he feels like this?! I couldn't. ...
After that, we finally got his pain under control, thankfully, so the crying stopped, but the screaming, uncontrollable tantrums - you never want to see a toddler with "roid rage" - and lack of sleeping persisted.
The latter was especially difficult. Will woke up about 5 times a night - basically every 1-2 hours , like a newborn. Except instead of just giving him a bottle or breastfeeding, like I did when he was a baby, I was cooking spaghetti at 2:30 in the morning. ..on almost no sleep. I was averaging about 2-3 hours of non-consecutive sleep a night.
And I thought to myself : how could I possibly go back to work like this? I couldn't.
Throughout his treatment, different side effects became worse, while others got a little better.
His doctors gave us the green light to send Will back to daycare/school because physically, his body has been doing really well, but we've been delayed by our school department, as we were waiting to get Will tested for speech and other delays due to his treatment.
Unfortunately, a few months ago, Will's disability payments (which he qualified for on account of having a life-threatening disease, etc) have gotten slashed in a third because the employee who processed our initial application didn't input everything correctly. Needless to say, things were tight enough before cutting his disability. Now, it's pretty much enough for gas to our appointments in Boston and maybe an oil change - that's it.
We've been fortunate enough to receive some small grants from various cancer nonprofits that have covered some of the essentials (like medicines not covered by insurance etc), but we've exhausted all those options.
Which wouldn't be a huge deal, since we are almost done with treatment (only about 6 weeks left), except that for the past 10 months or so, I've been having worsening health problems, that I haven't really had time or the means to address. I'm sort of embarrassed (well SUPER embarrassed by this whole thing), so I really don't want to go into specifics, except that my insurance doesn't cover it, and I was told it would be at least $5000 - which I don't have -not even close.
Anyway, it's going to take quite a while until Will and I are both back on our feet. I've been looking into financial aid to go to grad school - or at least a certificate program in the meantime - so I can build a more solid future for us.
I know things are tough for many of you as well, but if you can spare a dollar or two (or even just "share" this), we'd really appreciate it.
Thank you, sincerely, for reading this view into our lives.
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